Health: Tuberculosis

Baroness Brinton Excerpts

Thursday 21st November 2013 Lords Chamber

[Earl Howe]

My Lords, as the noble Lord is aware, NHS England allocates funding to clinical commissioning groups which commission health services on behalf of their local populations. It is for CCGs to decide how best to use the funding that is allocated to them, underpinned by clinical insight and knowledge of local healthcare needs. We expect health and well-being boards to have a major say in those areas where TB is commonplace.

[Baroness Brinton (LD)]

One of the key strands of the directly observed therapy recommended by the World Health Organisation for TB is standard treatment with supervision and patient support. What steps are being taken to empower patients with TB so that they can support DOT? Is there an expert patients scheme, as there is with many other chronic illnesses?

Children and Families Bill

Baroness Brinton Excerpts

Wednesday 20th November 2013 Grand Committee

I know that the Minister is reasonable, I have a suspicion that he would have the support of the Prime Minister and I am pretty confident that he would have the support of his coalition partners. I look forward to his response and I beg to move.

[Baroness Brinton]

My Lords, it cannot be right that it is a complete lottery for a grieving parent, probably in deep shock, in being entirely reliant on the good will of their employer. I shall give a slightly different example from the one given just now by the noble Lord, Lord Knight, and focus on an extended illness of a child. Jane, a junior manager whom I know, had a three year-old with leukaemia. The charity she worked for believed itself to be a caring and reasonable organisation, but the head of the charity objected to allowing further compassionate leave as the child was dying or when the child died, nor did they want to give leave to prepare for the funeral. They said that the parent should take unpaid leave, having used up her annual leave to be with her child in hospital earlier in the year.

It took a little while for this charity to be persuaded that this was not the appropriate course and, some years on, as a result of the organisation changing its view, the junior manager, Jane, is still there. She found support from friends and colleagues absolutely vital, both in the time immediately after the bereavement and later when she returned to work. What the family really needed after the death was time—time to prepare for the funeral, time to help other children in the family to understand and time to prepare for a return to an ordinary working life after such an extraordinary event.

I think, despite the story, that this manager was lucky. At the very least we need guidelines for employers, but I have sympathy with the amendment of the noble Lord, Lord Knight. As he has outlined, the costs are not too great either. Fortunately, losing a child is rare, so neither employers nor the Exchequer need worry that this will be a great cost. Also, as important as the humanitarian and caring approach is, parental bereavement leave is likely to help parents settle back into work, which in the long run will help both their employer and the state.

[Lord Stevenson of Balmacara]

My Lords, it is very difficult to follow the well presented case that has been made for action in this area, but I want to spend two seconds paying tribute to Lucy Herd, who is in the audience today. I was privileged to accompany her when she came to see the Minister and the Bill team and very bravely went through some of the things that had happened to her in her life and how she had coped with them. One wonders whether people really can dig so deep, and yet that is what she did; she turned the tragedy of the death of her deeply loved son, Jack, into a campaign that she is still waging and which we have heard about from my noble friend Lord Knight.

This situation cannot be right. We need to do better than we currently do as a society that says it cares about these sorts of issues. There is clearly a cost, but there are also other things that could be done at least to open the situation for discussion. If this happens to you or to your nearest and dearest, you should not then find during the trauma of what is happening that the rules are so adverse and difficult that you do not know where you stand in terms of your relationship to your employer or to anyone else or their agencies. Given the complications of what would happen and the timescales involved—because if there are inquests and other things they will span over a long period—this situation is clearly unstable and has to be resolved. I hope that the Minister will be able to help us

NHS: Mid Staffordshire NHS Foundation Trust

Baroness Brinton Excerpts

Tuesday 19th November 2013 Lords Chamber

[Baroness Brinton (LD)]

My Lords, we on these Benches welcome both the Francis report and the Government’s Statement. In particular, we welcome the importance of openness, transparency and access to information to ensure that there is a change in culture. Can the Minister confirm that the new care certificate will be an NVQ qualification so that the public can be confident that staff have the right skills and training? We would also welcome registration and regulation for those staff in the way that the noble Lord, Lord Hunt, referred to earlier. Can the Minister also confirm that when complaints and other items have to be published, it will not be as a few lines in an annual report but on the web, and that it will easily accessible by patients and the public?

[Earl Howe]

My Lords, I very much agree with the spirit of my noble friend’s questions. Certainly as regards complaints, the public should have a clear view of the nature of the complaints that have been registered with a particular organisation. They should be able to have a sense of what those complaints relate to and what action the organisation has taken to address the matter in question.

On my noble friend’s first point, we are currently working through the question of the care certificate and will seek advice. It is important to arrive at an agreed formula that gives the maximum assurance, both to care assistants and to those they look after, that basic standards of training have been learnt and are being adhered to. It is important to define as closely as we can what we mean by that, and as soon as we have further details we will announce them.

NHS: Clinical Commissioning Groups’ Funding of Treatment

Baroness Brinton Excerpts

Tuesday 12th November 2013 Lords Chamber

[Earl Howe]

My Lords, the system is very clear. If NICE recommends under its technology appraisal that a drug should be made available, the funding will automatically follow.

[Baroness Brinton (LD)]

My Lords, I declare an interest as a patient with rheumatoid arthritis who is on a biologic. What data are available to show whether CCGs follow NICE guidelines for the use of biologics and how long does it take for permission to be granted? I talked to rheumatologists last week at the National Rheumatoid Arthritis Society awards ceremony and I was told that there is increasing evidence that CCGs delay treatment for those on biologics. Is there a case for moving chronic illnesses such as RA to NHS England rather than relying on the lottery of CCGs?

[Earl Howe]

My Lords, the list of conditions for which treatment is directly commissioned by NHS England is reviewed regularly. On the particular question my noble friend asked about transparency, as part of Innovation Health and Wealth the innovation scorecard is now showing up the variations in prescribing rates between different clinical commissioning groups. We expect this information to be extremely informative as regards the decisions taken by commissioners.

NHS: Urgent and Emergency Care Review

Baroness Brinton Excerpts

Tuesday 12th November 2013 Lords Chamber

[Earl Howe]

We have been clear with Health Education England that this is not just about A&E consultants; it is about the entire workforce in A&E, including all relevant disciplines—nursing and others. We have tasked Health Education England with putting even greater emphasis on the need to recruit A&E consultants from medical students over the coming years.

[Baroness Brinton (LD)]

I know that my noble friend the Minister cannot comment on Sir Bruce Keogh’s review but I wondered, separately, if there was evidence in areas that have already reorganised their urgent and emergency care—such as the West Hertfordshire Hospitals NHS Trust, which reorganised in 2009—that services are performing well or indeed better than under the old arrangements.

[Earl Howe]

My Lords, I do not have that evidence in front of me but, where there is a case for change, the local NHS has to agree a number of measures to be effective before any changes to services take place. That will include ensuring additional capacity at neighbouring hospitals, where that is appropriate, or in the community, where that is appropriate. If CCGs can properly satisfy themselves that a case for change can provide safe, effective and sustainable services, that is a legitimate justification for moving forward with local proposals.

Health: Cancer

Baroness Brinton Excerpts

Monday 20th May 2013 Lords Chamber

[Earl Howe]

My noble friend raises a very important issue. I agree that it is important to draw together as much information as we can about causes of death from across the country. However, I am advised that the question of whether a cancer-related death can be attributed to the underlying disease or to the treatment cannot be answered comprehensively from information collected as part of the death certification process or the cancer registration process or, indeed, a combination of both. However, as I hope my previous answer indicated, I am sure that this is a developing science.

[Baroness Brinton]

My Lords, the Minister has kindly explained the tracking of the causes of death. What advice is given to doctors about recording dementia, which is often excluded when somebody has died of cancer? In the case of my late father, it was possible to get it added, but I suspect it may also be one of the reasons why dementia is underrecorded in this country.

[Earl Howe]

My noble friend asks a very good question. I will write to her on the specific question of dementia. I understand that the completed medical certificate of cause of death is given to the bereaved family which will present it to the registration service to register the death. The registrar will check that the doctor has completed the certificate fully, so it could then be open to the family to question anything that is not quite right on the certificate.

NHS: Primary Care Trusts

Baroness Brinton Excerpts

Tuesday 17th July 2012 Lords Chamber

[Earl Howe]

My Lords, if that case was a consequence of the primary care trust taking a blanket decision over a clinically valid investigation process then I would be very concerned and should be interested to hear the details from the noble Lord.

[Baroness Brinton]

My Lords, given that there is no consistency in the name that PCT committees are calling themselves to make these judgments about treatments and pathways, and often these matters are reported or hidden in longer performance reports, can my noble friend ensure that PCTs are open and transparent in their decision-making on these treatments, including referencing how their decision reflects NICE guidelines, and also insist that the appeals process is equally accessible?

[Earl Howe]

Yes, my Lords, we emphasise this principle at every opportunity. Indeed, transparency is a central principle, as my noble friend will be aware, in the way that the NHS constitution instructs the health service to make decisions rationally and transparently so that patients can see the basis on which those decisions have been arrived at. Again, if that is not happening in any area I should be very glad to hear about it.

Health: Neuromuscular Services

Baroness Brinton Excerpts

Wednesday 30th March 2011 Grand Committee

[Baroness Brinton]

My Lords, I thank the noble Baroness, Lady Thomas, for instigating this vital debate and confess to an embarrassingly limited knowledge of neuromuscular diseases compared with those who have spoken already. However, because of my experience with rheumatoid arthritis, I hope that your Lordships will allow this patient with creaky joints a brief contribution on the attitude and practice of PCTs and GPs in providing appropriate specialist physiotherapy.

The NICE guidelines, where available, are a very good illustration of how one can help a patient with a life-limiting illness with an holistic service. The guidance for those with MS is as comprehensive as the guidance for those with rheumatoid arthritis, with which I am obviously more familiar, but there needs to be more for other neuromuscular diseases as a matter of urgency. As the noble Baroness, Lady Jolly, commented earlier, this is becoming the theme of this debate.

Page 19 of the MS guidance states that,

“a specialist neurological rehabilitation team ... should include specialist doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, clinical psychologists and social workers”.

The theory of this is fine, but having talked to friends at our Tai Chi for arthritis class in Watford, which includes those with MS, I know that the reality can be patchy. With budget pressures on PCTs at the moment, it becomes very easy to dilute that support for patients.

For example, I have heard that at the end of last year my own PCT, West Hertfordshire, was considering creating its own “first line” of physiotherapy for patients not already referred to the hospital. At a practical level, this would mean that physios at the hospital would not be needed and would be sitting around with empty appointments lists. Much more worryingly, patients would be seeing a general physiotherapist who did not have the specialist training needed for neuromuscular diseases or diseases such as RA, when they needed to be seen by specialists right from the start.

This early specialist intervention is vital. In my own case, I see a physiotherapist, a hand specialist in OT and an orthortist, all of whom are there to ensure that I keep as much mobility and flexibility as possible and avoid serious joint deformity. Members may see me doing peculiar hand exercises at odd times. It is not semaphore; I need to keep my fingers and wrists moving before they completely stiffen up. Patients who do not get access to this specialist physio and OT support tend to lose mobility earlier and are more likely to give up working sooner than their colleagues who are getting that help. For those with neuromuscular conditions, maintaining the tone of muscles is also vital. It is vital for their independence. Frankly, it is vital also for the cost to the country of supporting them.

I gather that there was an outcry at the proposal from my PCT for a “first line” general physiotherapist and it was quietly dropped. However, I remain concerned that, in the current tight financial world, money becomes the order of the day, making it easy to curtail these services. I was also interested in the comments of the noble Lord, Lord Luce, about limited access to pain clinics. They are absolutely vital. In my own PCT, referrals take many months—often more than a year—which is hopeless if you are in severe pain and need support.

I also have concerns about the ability of GPs, with the pressures on their time, to plug patients into the specialist services. The NICE guidance for MS runs to 218 pages, with the one for patients and the public a mere 64 pages. Hard-pressed GPs, who may see very few patients with these diseases, cannot keep all the different details of NICE guidance in their heads, and new patients often do not know to what they are entitled. It is a Donald Rumsfeld situation: you do not know what you do not know. However, being fairly brazen, I asked my GP for help with my support early on, and she and I read through the guidance together and mapped out a plan. She said that, until I asked her, she had not been aware of the entitlement to the full range of physiotherapy support. I do not blame her for that at all. There is no way that a GP can know all there is to know about every bit of NICE guidance. I add in parentheses that the NICE guidance is seriously impressive and, if we use it as a standard, that will be fantastic. I return to the point that I made earlier—the receipt of this support by patients is very patchy.

I also know from talking to other RA and MS patients in my area that they had no idea at all that they were entitled to specialist physiotherapy services, and, more worryingly, nor did their GPs. I suspect that the same is true for those with neuromuscular diseases. Therefore, I ask: how much more difficult is it for those with more rare diseases to access the services to which they are entitled where there are not even NICE guidelines?

I welcome the proposals for a national neuromuscular services plan, but I ask the Minister to ensure that a simple handy guide is made available to GPs for them to use when a patient is first diagnosed to make sure that the patient gets access to physiotherapy support as early as possible. In that way, we can move to one consistent standard of service and improve the outcome for patients.

Health: Polymyalgia Rheumatica and Giant Cell Arteritis

Baroness Brinton Excerpts

Wednesday 30th March 2011 Grand Committee

[Baroness Brinton]

My Lords, I thank the noble Lord, Lord Wills, for calling this debate on a rare pair of diseases that have serious impacts on patients’ lives. I also have a sense of déjà vu, having spoken in the previous debate about holistic services for those with life-limiting illnesses, based on my experience of physiotherapy services for rheumatoid arthritis. RA is much more common than polymyalgia rheumatica and giant cell arteritis, and I suspect that diagnosis of it is relatively easy. Today, I shall focus on PMR.

I say “relatively” because for most of the time the diagnosis of this family of auto-immune diseases is often a bit hit and miss, with much of it based on a subjective view of the GP on the level of stiffness of joints and pain that a patient is experiencing. That is particularly true for those who have seronegative rheumatology disease, which can be just as disabling for those with seropositive results. I know of sufferers who say that it took them a long time to get their GP to take their pain and stiffness seriously enough even to get a referral to a consultant. After all, is stiffness not just a bit inconvenient? For those without this type of arthritis it is impossible to convey the dread of waking up in the morning, knowing that that first move to get out of bed is like moving after having a night’s sleep following a 20-mile hike the previous day. Yet that happens every morning and every joint screams at you as you start to move.

As your creaky joints start to loosen up, you are working out how on earth to get down those stairs. Your knees and ankles will not co-operate for at least the next hour, and your shoulders are so stiff that you cannot lift them to hold the banister. Yet you need to get downstairs because, while you cannot take your medication until you have eaten, you are desperate for the anti-inflammatory steroids and painkiller drugs. For patients trying to get a diagnosis, that must be absolutely terrifying. They may not have learnt the language of pain description, let alone have got access to pain clinics and effective pain control. The noble Lord, Lord Black of Brentwood, made the essential point about over-reliance on steroids. The Prednisolone bounce may give relief—I speak from personal experience—but its long-term use is worryingly dangerous. For PMR, the use of disease-modifying drugs such as Methotrexate should now be investigated as routine, as they are for RA, thus reducing the need for long reliance on steroids.

For PMR sufferers, there is also the further problem of disabling headaches, which are famously difficult to diagnose as they can be symptoms of a large range of problems, some serious and others not. Thirty years ago, many GPs would have put this down to stress. Perhaps some still do today.

As I mentioned in the previous debate, the NICE guidelines are very impressive, but there is an issue about GPs being aware of the detail and therefore ensuring that patients get early access to specialist physiotherapy, occupational therapy and so forth. I hope that the Minister will forgive me for briefly repeating the point that I made in the earlier debate. This early specialist intervention is absolutely vital. In my own case, I see a physiotherapist, a hand specialist and an orthotist, all of whom are there to ensure that I keep as much mobility and flexibility as possible.

Patients who do not get access to this specialist physio and OT support tend to lose mobility earlier and are more likely to give up working sooner than their colleagues who are getting that help. A substantial percentage of rheumatology patients are no longer able to work within five years of diagnosis. This is vital for the independence of patients but, frankly, it is also vital to the country because of the cost of supporting those patients. The same is true for PMR but, without the NICE guidelines, it is almost impossible.

Rare diseases need champions and I ask the Minister to ensure that PMR patients get access to the NICE guidelines or, while that is being sought, that they are deemed to be covered by the RA guidelines, many of which seem to cover the treatment needed for PMR. Reading through the drug regime, the physical needs and so forth, there is much overlap. I ask the Committee to forgive this non-clinician patient view of the world. I am sure that it is too simplistic but there are things that can be learnt from it. Surely access to the appropriate holistic services is as essential for PMR patients as for RA patients.

I want to end on a positive note. I asked the Minister privately some time ago about the status of these NICE guidelines under the proposed new healthcare changes emerging from the White Paper and the Bill. I was much encouraged with his response that the guidelines would take a stronger role for clinicians in their treatment and support for patients. What is important is that NICE has the capability to produce guidelines for the rarer diseases in the rheumatology sector that rely on early diagnosis and treatment to protect the health of the patient and to prevent deterioration through active physiotherapy.